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INNOVATIONS IN SERVICE
dElIVERy IN ThE
Age of genomics
W o r k s h o p s u m m a ry
Erin Hammers, Rapporteur
Roundtable on Translating Genomic-Based Research for Health
Board on Health Sciences Policy
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THE NATIONAL ACADEMIES PRESS 500 Fifth Street, N.W. Washington, DC 20001
NOTICE: The project that is the subject of this report was approved by the Governing
Board of the National Research Council, whose members are drawn from the councils of
the National Academy of Sciences, the National Academy of Engineering, and the Institute
of Medicine.
This project was supported by contracts between the National Academy of Sciences and Amer-
ican College of Medical Genetics (Unnumbered contract); American College of Physicians
(Unnumbered contract); American Medical Association (Unnumbered contract); American
Nurses Association (Unnumbered contract); AstraZeneca Pharmaceuticals, Inc. (Unnumbered
contract); Blue Cross/Blue Shield Association (Unnumbered contract); Centers for Disease
Control and Prevention (Contract No. 200-2005-13434); College of American Pathologists
(Unnumbered contract); Department of Veterans Affairs (Contract No. V101(93) P-2238); Eli
Lilly and Company (Contract No. LRL-0028-07); Food and Drug Administration (Contract
No. 223012460); Genetic Alliance (Unnumbered contract); Genomics Health, Inc. (Unnum-
bered contract); GlaxoSmithKline, Inc. (Unnumbered contract); Health Systems Research,
Inc. (Contract No. 07-H0116); National Human Genome Research Institute (Contract No.
N01-OD-4-2139, TO#189); National Institute of Child Health and Human Development
(Contract No. N01-OD-4-2139, TO#189); National Society of Genetic Counselors (Unnum-
bered contract); Secretary’s Advisory Committee on Genetics, Health and Society (Contract
No. N01-OD-4-2139, TO#189); and UnitedHealthcare (Unnumbered contract). Any opin-
ions, findings, conclusions, or recommendations expressed in this publication are those of
the author(s) and do not necessarily reflect the views of the organizations or agencies that
provided support for the project.
International Standard Book Number-13: 978-0-309-13214-5
International Standard Book Number-10: 0-309-13214-2
Additional copies of this report are available from the National Academies Press, 500 Fifth
Street, N.W., Lockbox 285, Washington, DC 20055; (800) 624-6242 or (202) 334-3313 (in
the Washington metropolitan area); Internet, http://www.nap.edu.
For more information about the Institute of Medicine, visit the IOM home page at: www.
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Copyright 2009 by the National Academy of Sciences. All rights reserved.
Printed in the United States of America
The serpent has been a symbol of long life, healing, and knowledge among almost all cultures
and religions since the beginning of recorded history. The serpent adopted as a logotype by
the Institute of Medicine is a relief carving from ancient Greece, now held by the Staatliche
Museen in Berlin.
Suggested citation: IOM (Institute of Medicine). 2009. Innovations in service delivery in the age
of genomics: Workshop summary. Washington, DC: The National Academies Press.
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“Knowing is not enough; we must apply.
Willing is not enough; we must do.”
— Goethe
Advising the Nation. Improving Health.
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The National Academy of Sciences is a private, nonprofit, self-perpetuating society
of distinguished scholars engaged in scientific and engineering research, dedicated to
the furtherance of science and technology and to their use for the general welfare.
Upon the authority of the charter granted to it by the Congress in 1863, the Acad-
emy has a mandate that requires it to advise the federal government on scientific
and technical matters. Dr. Ralph J. Cicerone is president of the National Academy
of Sciences.
The National Academy of Engineering was established in 1964, under the charter
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The National Research Council was organized by the National Academy of Sci-
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Dr. Ralph J. Cicerone and Dr. Charles M. Vest are chair and vice chair, respectively,
of the National Research Council.
www.national-academies.org
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WORKSHOP PLANNING COMMITTEE
ALfREd O. BERG, University of Washington
REBECCA fISHER, Central Intelligence Agency
MICHELE LLOyd-PuRyEAR, Health Resources and Services
Administration
ALExANdRA E. SHIELdS, Harvard/Massachusetts General Hospital
Center on Genomics, Vulnerable Populations & Health Disparities
MARTHA TuRNER, American Nurses Association, Center for Ethics
and Human Rights
CATHERINE A. WICKLuNd, Northwestern University
Institute of Medicine (IOM) planning committees are solely responsible for organizing
the workshop, identifying topics, and choosing speakers. The responsibility for the published
workshop summary rests with the workshop rapporteur and the institution.
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ROuNDTABLE ON TRANSLATING
GENOMIC-BASED RESEARCH FOR HEALTH1
WyLIE BuRKE (Chair), Professor and Chair, Department of Medical
History and Ethics, University of Washington, Seattle
STEPHEN ECK, Vice President, Translational Medicine &
Pharmacogenomics, Eli Lilly and Company, Indianapolis, Indiana
FAITH T. FITzGERALD, Professor of Medicine, Assistant Dean of
Humanities and Bioethics, University of California, Davis Health
System, Sacramento
GEOFFREy GINSBuRG, Director, Center for Genomic Medicine,
Institute for Genomic Sciences & Policy, Duke University, Durham,
North Carolina
ALAN E. GuTTMACHER, Deputy Director, National Human Genome
Research Institute, National Institutes of Health, Bethesda, Maryland
R. RODNEy HOWELL, Special Assistant to the Director, National
Institute of Child Health and Human Development, Bethesda,
Maryland
KATHy HuDSON, Director, Genetics and Public Policy Center, Berman
Bioethics Institute, Johns Hopkins University, Washington, DC
SHARON KARDIA, Director, Public Health Genetic Programs; Associate
Professor, Department of Epidemiology, University of Michigan
School of Public Health, Ann Arbor
MOHAMED KHAN, Associate Director of Translational Research,
Department of Radiation Medicine, Roswell Park Cancer Institute,
Buffalo, New York
MuIN KHOuRy, Director, National Office of Public Health Genomics,
Centers for Disease Control and Prevention, Atlanta, Georgia
ALLAN KORN, Chief Medical Officer, Senior Vice President Clinical
Affairs, BlueCross/BlueShield Association, Chicago, Illinois
DEBRA LEONARD, Professor and Vice Chair for Laboratory Medicine;
Director of the Clinical Laboratories for New York–Presbyterian
Hospital, Weill Cornell Medical Center of Cornell University,
New York
MICHELE LLOyD-PuRyEAR, Chief, Genetic Services Branch, Health
Resources and Services Administration, Rockville, Maryland
ROBERT L. NuSSBAuM, Chief, Division of Medical Genetics,
University of California, San Francisco, School of Medicine
1 IOM forums and roundtables do not issue, review, or approve individual documents. The
responsibility for the published workshop summary rests with the workshop rapporteur and
the institution.
vi
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TimoThy o’Leary, Director, Biomedical Laboratory Research
and Development Service; Director, Clinical Science Research and
Development Service, Department of Veterans Affairs, Washington, DC
ameLie G. ramirez, Dielmann Chair, Health Disparities and
Community Outreach Research; Director, Institute for Health
Promotion Research, University of Texas Health Science Center at
San Antonio
aLLen D. roses, Jefferson-Pilot Professor of Neurobiology and
Genetics, Professor of Medicine (Neurology); Director, Deane Drug
Discovery Institute; Senior Scholar, Fuqua School of Business,
R. David Thomas Executive Training Center, Duke University,
Durham, North Carolina
sTephen G. ryan, Executive Director, Discovery Medicine and
Epidemiology, AstraZeneca Pharmaceuticals, Wilmington, Delaware
Kevin a. schuLman, Professor of Medicine and Business
Administration; Director, Center for Clinical and Genetic Economics;
Associate Director, Duke Clinical Research Institute, Duke University
School of Medicine, Durham, North Carolina
paTricK Terry, Director, Consumer Advocacy and Government
Affairs, Genomic Health, Inc., Washington, DC
sharon Terry, President and CEO, Genetic Alliance, Washington, DC
sTeven TeuTsch, Executive Director, U.S. Outcomes Research,
Merck & Co., Inc., West Point, Pennsylvania
marTha Turner, Assistant Director, American Nurses Association,
Center for Ethics and Human Rights
michaeL s. WaTson, Executive Director, American College of
Medical Genetics, Bethesda, Maryland
caTherine a. WicKLunD, Immediate Past President, National
Society of Genetic Counselors; Associate Director, Graduate Program
in Genetic Counseling; Assistant Professor, Department of Obstetrics
and Gynecology, Northwestern University, Chicago, Illinois
JaneT WooDcocK, Deputy Commissioner and Chief Medical Officer,
Food and Drug Administration, Bethesda, Maryland
Roundtable Staff
anDreW pope, Director
LyLa m. hernanDez, Project Director
erin hammers, Research Associate
aLex repace, Senior Project Assistant
IOM Anniversary Fellow
Lisa BarceLLos, Assistant Professor, University of California, Berkeley
vii
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Reviewers
This report has been reviewed in draft form by individuals chosen
for their diverse perspectives and technical expertise, in accordance with
procedures approved by the National Research Council’s Report Review
Committee. The purpose of this independent review is to provide candid
and critical comments that will assist the institution in making its published
report as sound as possible and to ensure that the report meets institutional
standards for objectivity, evidence, and responsiveness to the study charge.
The review comments and draft manuscript remain confidential to protect
the integrity of the deliberative process. We wish to thank the following
individuals for their review of this report:
David R. Nerenz, Ph.D., Center for Health Services Research, Henry
Ford Hospital and Henry Ford Health System Neuroscience
Institute
Karen Powell, M.S., C.G.C., Center for Biotechnology, Genomics
and Health Research, The University of North Carolina at
Greensboro
Sylvia Trujillo, J.D., M.P.P., Division of Legislative Counsel,
American Medical Association
David veenstra, Ph.D., Institute for Public Health Genetics and
Department of Pharmacy, University of Washington
Beverly M. yashar, M.S., Ph.D., Genetic Counseling Graduate
Program, Departments of Human Genetics and Ophthalmology
and Visual Sciences, Kellogg Eye Center, University of Michigan
ix
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x REVIEWERS
Although the reviewers listed above have provided many constructive
comments and suggestions, they were not asked to endorse the final draft
of the report before its release. The review of this report was overseen by
Dan Blazer, M.D., Ph.D., Duke University Medical Center. Appointed by
the Institute of Medicine, he was responsible for making certain that an
independent examination of this report was carried out in accordance with
institutional procedures and that all review comments were carefully con-
sidered. Responsibility for the final content of this report rests entirely with
the rapporteur and the institution.
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Contents
1 INTRODUCTION 1
2 GENETIC SERVICE DELIVERY: THE CURRENT SYSTEM
AND ITS STRENGTHS AND CHALLENGES 3
Current Status of Genetic Service Delivery, 3
Debra Lochner Doyle, M.S., C.G.C.
Challenges of Disparities and Access, 6
Alexandra Shields, Ph.D.
Patient Education and Communication, 10
Vivian Ota Wang, Ph.D., F.A.C.M.G., C.G.C.
Educational Pipeline and Workforce, 12
Catherine A. Wicklund, M.S., C.G.C.
Discussion, 17
Wylie Burke, M.D., Ph.D., Moderator
3 NEW MODELS FOR SERVICE DELIVERY 21
Informed Medical Decisions, Inc., 21
Heather Shappell, M.S., C.G.C.
Navigenics, 23
Elissa Levin, M.S., C.G.C.
Cincinnati Children’s Hospital Medical Center, 27
Cynthia Prows, M.S.N., R.N.
Discussion, 29
Wylie Burke, M.D., Ph.D., Moderator
xi
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xii CONTENTS
4 VISION OF THE FUTURE 33
Wylie Burke, M.D., Ph.D.
Discussion, 38
Wylie Burke, M.D., Ph.D., Moderator
5 BRAINSTORMING ON A SERVICE DELIVERY MODEL
FOR THE FUTURE 41
Sharon Kardia, Ph.D., Moderator
Panelists: Debra Lochner Doyle, M.S., C.G.C.; Alexandra
Shields, Ph.D.; Vivian Ota Wang, Ph.D., F.A.C.M.G., C.G.C.;
Catherine Wicklund, M.S., C.G.C.; Frederick Chen, M.D.,
M.P.H.; Catherine DesRoches, Dr.P.H.; Bruce Korf, M.D.,
Ph.D.; and Sharon Terry
Health Care Delivery System, 41
Health Information Technology, 44
Data Collection, 46
Discussion, 48
Sharon Kardia, Ph.D., Moderator
6 CONCLUDING REMARKS 51
Wylie Burke, M.D., Ph.D.
Catherine Wicklund, M.S., C.G.C.
REFERENCES 53
APPENDIXES
A WORKSHOP AGENDA 57
B SPEAKER BIOSKETCHES 61
FIGuRES
2-1 Attention focusing: Vase or two faces, 12
4-1 Vanishing family history of colorectal cancer, 35
5-1 Stratification of genetics in medicine, 42
BOx
3-1 Conditions Covered by Navigenics Genetic Testing in 2008, 27
